Personal Blog #13 … Dementia Patients in Hospital Emergency Departments

I have written several articles describing how poorly
my late wife, a victim of early onset Alzheimer’s disease (AD), was treated
whenever she was in a hospital Emergency Department (ED).  My ED experiences as her AD spouse caregiver
were uniformly poor.  I always found
nurses to be extremely competent and empathetic.  However, I almost always found doctors to be ignorant about how to communicate with her effectively, let alone how to
diagnose and treat her effectively.  In
addition, many times her doctors, and technicians, routinely refused my offers
to provide information that would help them diagnose and treat her more
effectively.  As a result, my wife
suffered needlessly during each visit.
In my March/April 2018 article in Annals of Long-Term Care,
I wrote a response to an article published in that journal’s previous issue
about the American Geriatrics Society’s formation of the Geriatrics Emergency
Department Collaborative (GEDC), a consortium of some of our country’s leading
health systems and medical societies, “to help improve emergency care for our
nation’s older adults.”  I expressed my
appreciation for this initiative, but I also noted that there was no mention of
the GEDC seeking input from the caregivers of dementia patients … the very
people who could offer firsthand observations of patient care, and who could
suggest possible recommendations for improved practice based upon their
The GEDC’s stated goal is to improve “healthcare outcomes” for
older people in EDs. 

Their website ( states, “We are
committed to making change through the education of individuals, and
hospital-wide initiatives that create sustainable improvements in practice at
all levels.”  The GEDC has now applied
for a five year grant through the NIH (National Institutes of Health) and NIA
(National Institute of Aging) “
to support the
development of a collaborative research and resource network to synergize the
expertise, skills, and resources of investigators within the geriatric
emergency medicine and Alzheimer’s disease and Alzheimer’s disease-related
dementias (AD/ADRD) research communities, to identify and address research gaps
towards optimizing recognition and emergency care of older adults with AD/ADRD.”
Last month I was honored to be asked to
serve on the Geriatric Emergency care Applied Research (GEAR 2.0) Task Force
that will implement this grant if it is funded. 
In my role as a former AD spouse caregiver, I will be able to provide a
voice for dementia caregivers and their loved ones, and to describe what it’s
like for dementia patients and their caregivers in an ED.  I will also serve as a dementia patient
advocate to provide a voice for recommending improved medical training for ED
personnel, and improved ED practices and procedures.
Should you have suggestions for improving
patient care in hospital EDs, please email them to me at
[email protected] and I will try to include them in my recommendations to the Task
Force.  Meanwhile, I will provide
periodic updates of the status of this grant proposal on this website.  
It’s been almost four years since I was in an
ED with my wife, and I would like to think that doctors have made some progress
in learning how to communicate effectively with patients experiencing moderate
or severe stages of AD or some other form of dementia.
 I would also like to think that doctors have
made some progress in learning how to effectively examine and diagnose dementia
patients brought to their ED.
  Sadly, dementia
caregivers tell me this is still not happening.

Please let me know if you have suggestions for
ED improvement based upon your own personal experiences as a dementia
caregiver.  This grant may be a genuine
opportunity for caregivers to make a difference … to really affect the training
of current and future ED doctors and improve the procedures followed in EDs
across the country.  
Let’s make the most of it!

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